Uninsured in America

Susan Sered, author of the seminal work Uninsured in America: Life and Death in the Land of Opportunity (2005), returned to the same communities to learn how the people she originally interviewed were faring after the implementation of the ACA. Not a single person she interviewed had remained in the same coverage status for more than a few years at a time. Even with insurance, health care was hardly affordable for many. Most important, geographically driven health disparities had been exacerbated by the 2012 U.S. Supreme Court ruling, leaving large numbers of people to fall into the “coverage gap.” The existence of these gaps, together with the inconsistent nature of coverage and the absence of a human rights ethos, created barriers and resentment, with many people feeling that other categories of people received greater benefits.

Stratification and “Universality”

Tiffany D. Joseph’s chapter examines how stratification of access by immigration status effectively undermined a “universal” health policy. While the ACA only extended coverage to U.S. citizens and eligible documented immigrants, Massachusetts pursued a universal health care system at the state level and offered coverage to all residents, regardless of documentation status. Despite this policy that aimed for inclusion, immigrants in Massachusetts were still more likely than non-immigrants to remain uninsured. Joseph interviewed Brazilian and Dominican immigrants, health care professionals, and immigrant/health organization employees to find out why immigrants remained uninsured. She identified immigration-related, health care system, and bureaucratic barriers that prevented individuals from effectively accessing care. Massachusetts serves as both a model and a cautionary tale for ACA implementation, with barriers exacerbated for immigrant, low-income, and minority populations.

Introduction

In this chapter, Jessica M. Mulligan and Heide Castañeda provide an overview of the Affordable Care Act focused on the coverage expansions that were at the heart of the law. The authors outline the ethnographic methods used in the book, arguing that an anthropological approach provides an experience-near perspective on implementation that too often is absent in mainstream treatments of health policy. The central theoretical concerns of the book are also introduced: stratified citizenship, risk, and responsibility. The term stratified citizenship describes how certain social identities and demographic characteristics—such as immigration status, income, gender, race, and state of residence—mediated how people were included or excluded from health insurance coverage through the ACA. Exposure to risks as well as inclusion in the new responsibilities created by the law were also unequally distributed.

Outsourcing Responsibility

Cathleen E. Willging and Elise M. Trott argue that politically driven processes of the past have shaped the current context of mental health care delivery in New Mexico. Provisions of the ACA, including the expansion of Medicaid and outreach to underserved populations, offered the possibility of improving access and services for New Mexicans struggling with unmet treatment needs. However, as the authors argue, public stewards manipulated key ACA provisions to propagate unsubstantiated allegations of waste, fraud, and corruption against safety-net service providers. This chapter shows how public-private partnerships in the Medicaid arena, discourses of transparency, and technologies of accountability can engender truthiness claims, obscure vital information, destabilize a behavioral health care safety net, and deny low-income citizens care. They argue that scholars have the responsibility to attend to the “total bureaucratization” of government-funded health care systems that also allows such abuse of authority.

Increasing Access, Increasing Responsibility

Mary Alice Scott and Richard Wright’s chapter explores the intersections of seemingly opposing understandings of health—as a “right” or a “responsibility”—in health care professionals’ commentaries on ACA implementation in a formerly free clinic in southern New Mexico. The concepts of co-responsibility and of patient engagement—increasingly central to health care and other social programs globally— were reflected in staff framing of health care problems, clinic activities, and conceptualizations of patients. Patient engagement requires motivating patients to increase participation in their own health care and empowering them to develop self-efficacy. As this chapter shows, there is often a mismatch between provider expectations of shared responsibility and the highly constrained actions of patients, who in this study confronted structural barriers including being homeless, lack of regular transportation, and undocumented immigration status.

The Responsibility to Maintain Health

Susan J. Shaw’s chapter examines the management and regulation of low-income residents' access to and coverage for medications in Massachusetts. This chapter shows how Medicaid patients experience accountability in health care as they struggle to pay out-of-pocket costs for their medications and endure frequent eligibility re-certifications for insurance coverage. Their physicians are subject to insurers’ cost savings measures that include changing lists of covered medications. Shifts in medication benefits intersect with complex pharmaceutical beliefs that shape low-income patients’ adherence to biomedical care for chronic disease. Utilizing insights about the importance of “audit culture” to regimes of accountability, she argues that the Massachusetts experience of health care reform serves as a cautionary tale of the diverse costs of health care reform in neoliberal moral economies of care.

“Texans Don’t Want Health Insurance”

Emily K. Brunson’s chapter examines how the ACA has unfolded in Texas, a state with significant popular and political sentiment against the law despite being home to the highest percentage of uninsured persons in the nation. Presenting longitudinal case studies of three previously uninsured women—some of whom were able to access insurance coverage following the ACA and some of whom fell into the coverage gap—Brunson shows how each person struggled with issues of choice, responsibility, and risk in relation to their health care. The chapter also considers how social class and gender affected these women’s experiences of the ACA. Brunson concludes that while the ACA has improved health care access and health outcomes for some Texans, it has also deepened inequalities by increasing stratification based on social class.

Segmented Risks

Jessica M. Mulligan’s chapter draws on the concepts of “dog whistle politics” and white resentment to make sense of repeated attempts to repeal the ACA and disrupt its implementation. This chapter examines the different meanings and impacts of the law for differently situated individuals and families, some of whom fell into the “coverage gap” created by red states’ decision not to expand Medicaid. She concludes that there is no shared sense of the social created through the law, which has impacted its success. Instead, people’s experience of health care reform, and potentially enhanced health care access, is mediated by a politics of resentment, eligibility, and actuarial categories, past experiences with insurance and illness, and attempts to care for loved ones.

Stratification through Medicaid

Elise Andaya’s chapter focuses on Medicaid-covered prenatal care in New York State to illustrate how health care for low-income people after the passage of the ACA reconstituted preexisting patterns of exclusion and reinforced long-standing moral divisions between the “righteous” and the “undeserving” poor. Stratification was especially evident in pervasive beliefs about the disposability of poor people’s time. In addition, poor women were singled out as medically and socially high-risk patients and their inclusion in the body politic was only temporary. Shortly after pregnancy ended, women and their infants were reincorporated into society through new or existing categories of stratified health citizenship, including non-citizenship. This chapter suggests we must go beyond understanding lack of coverage to also take account of how different forms of health coverage can also contribute to experiences of health inequality.

Stratified Access

Milena Andrea Melo’s chapter examines the impact of the lack of health insurance coverage for low-income, undocumented immigrants who required regular dialysis to stay alive. Undocumented immigrants are deemed undeserving of most publicly funded health care services by virtue of their “illegal” status. Those with chronic, debilitating illness struggled to navigate public and private health care institutions as indigent patients in order to locate life-saving but substandard treatment. Since they were uninsured, irregular and costly dialysis treatments in hospital emergency rooms, paid by Emergency Medicaid, was their only option. The chapter demonstrates that the health system itself exacerbated health risks for dialysis patients by requiring that they come close to death before emergency services were offered. This chapter raises questions concerning belonging, deservingness of care, and American notions of human rights in cases where those with nothing more than “bare life” are excluded.